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Bioethics and Medicine
Summer 2013 • Daniel P. Sulmasy remembers the late Dr. Edmund Pellegrino
Fall 2012 • Caitrin Nicol revisits Anne Fadiman’s tale of two cultures and the life of Lia Lee
Fall 2012 • Brendan Foht reviews Jonathan D. Moreno’s The Body Politic
Summer 2012 • Aaron Rothstein reviews books on embracing, not fixing, mental differencesNext
October 6, 2008 •
Los Angeles Times health reporter Shari Roan has a terrific series on “the politics of embryos.” (Bonus: One piece quotes The New Atlantis’s own Yuval Levin.)
ALSO IN THE LAT: How easy is it to donate embryos to research? Or for adoption? Embryo legislation, state by state.
Six years of frustration and heartbreak. That’s how Gina Rathan recalls her attempts to become pregnant.
Finally, she and her husband, Cheddi, conceived a daughter, now 3, through in vitro fertilization. About a year later, she became pregnant with a second child, naturally. Their family was complete.
Then, a year ago, the Fountain Valley couple received a bill reminding them that their infertility journey wasn’t quite over. They owed $750 to preserve three frozen embryos they’d created but hadn’t used....
Finally, the couple paid for three more years of cryopreservation.
“I think about the embryos every day,” Rathan says. “I am their mother. I see them as my own children. They are the DNA from my husband and I. It’s something I worry about, especially when the three years is over and I have to make a decision again.”
September 29, 2008 •
Your humble blogger has a review in the latest issue of the Weekly Standard about Donna Dickenson’s chilling exposé, Body Shopping: The Economy Fuelled by Flesh and Blood. In the piece, I discuss some of the more grisly practices of the global trade in human flesh and how we can rein in the worst of the body-snatchers:
Body Shopping describes a science that has become positively vampiric in its insatiable appetite for human tissue and organs, sometimes outright stealing the raw material it needs. A veritable black market in human flesh has been established, with each part individually appraised and priced: “Hand, $350-$850, Brain, $500-$600, Eviscerated torso, $1,100-$1,290.” A whole cadaver can fetch up to $20,000. The uses to which this tissue is put are no less gruesome. Bone dust from stolen cadavers might be found in your dental work. The collagen used to plump a starlet’s lips is likely derived from the cells of an infant’s foreskin. The “secret ingredient” in the various beauty treatments marketed to Russian women? Aborted fetuses from Ukraine.
“One way or another someone makes money off the dead,” one proud body snatcher declared, even as he pleaded guilty to over 60 counts of mutilation of human remains, and embezzlement. The entrepreneurial spirit cannot be tamed, it would seem, especially in so lucrative a venture as body shopping.
RELATED: I interviewed Professor Dickenson about her book for Conceptions here.
July 18, 2008 • Nature magazine's July issue has a special feature on the 30th anniversary of IVF. After discussing the legacy of IVF (subscrip. req'd), Nature asked a group of scientists what the next 30 years of IVF research will look like. Among the predictions:
- Scientists will be able to create sperm and egg cells for anyone. Using sperm and egg cells derived from induced pluripotent stem cells, scientists will end infertility. Newborns and hundred-year-olds could become parents.
- Embryo research will become a "fact of life": "They would become objects and would be used as objects...Maybe 20–30 years from now we'll read in newspapers that someone made 20,000 embryos and studied their development, and we'll decide it's OK."
- IVF for less than $100: Cheap IVF will soon be made available in developing countries.
- Healthy babies will be assured with the use of "genetic cassettes." Scientists will insert the cassettes into embryos to correct for diseases like Huntington's.
- But people will still have sex: "IVF is expensive and uncomfortable. The old-fashioned way is cheaper and more fun and that won't change in 30 years."
- Artificial wombs will change the abortion debate: "If an artificial womb were developed, the government could pass a law that requires people who have a termination of pregnancy to put the fetus into one of these wombs."
- Alert the trial lawyers: There will be litigation over the health of IVF babies. "With the increasing availability of IVF, there will be more emphasis on safety. Not enough is known about the long-term health of the Louise Browns of this world — if there is a problem, it will be unexpected."
July 2, 2008 •
- Stanford researchers try to improve IVF odds.
- This weekend, the first baby in the U.K. guaranteed not to have the breast cancer gene was born. So where will genetic screening lead? Slashdot debates.
- California wants to pay women for eggs for stem cell research.
- A Minnesota woman tries to conceive her husband’s child ... after his death.
- “To anyone who thinks IVF is an easy option, take it from me, it definitely isn’t.”
- Fertility coaching: Does it work?
- Increased risk of depression after a successful IVF pregnancy.
- Dream baby arrives ... by bus.
- In the U.K., “one egg” IVF strategy launched.
- Alone and pregnant on purpose: Single moms in Canada commiserate.
- Human-pig hybrid embryos given go ahead.
May 27, 2008 •
I'm still recovering from the long holiday weekend, hence the non-existent posting of the last few days. Fortunately, other bloggers were not so lazy. Here are a few must-read posts:
- Jesse Reynolds takes a critical eye to Gordon Brown's stem cell research letter: "Like so many writings advocating cloning-based stem cell research (i.e., somatic cell nuclear transfer), Brown's op-ed drifts to distortion and hyperbole."
- Will Saletan considers Britain's new ART law by the numbers.
- Jennifer Roback Morse looks at how GLBT families and same-sex marriage could redefine the family.
- GLBT parents discuss family structure and the role of biology: "There is a desire to understand one’s biology. . . . It’s not right to dismiss those feelings and deny your child their biology.”
- Science Progress explains why GINA matters.
May 27, 2008 •
- For years, sperm banks have focused solely on sperm donors and the women they get pregnant—not the offspring they produce. That's about to change.
- Who's more likely to be treated: a premature infant, or an older patient with a lower chance of survival?
- "Frankenstein Science": Has Britain lost its way?
- "The hardest decision is knowing when to stop treatment. You always think, 'What if the next one works?'"
- Do all women have the right to become mothers?
- An unusual set of quadruplets: A Nigerian woman gives birth to identical twins and fraternal twins.
- "You can walk in and say your sister got pregnant and everyone else will say 'Oh my God, we hate her too.'"
- Germany decries Britain's new ART law.
- A gene for infertility?
- More repro-lit: The pregnant man writes a memoir. A new play about how people become parents.
- Charlie Sheen and Denise Richards feud over "sperm donation" email.
- Natural remedies for infertility? Acupuncture gains popularity.
- The "next big advance in IVF": DNA fingerprinting.
- Babies born preterm are more than twice as likely to have major birth defects as full-term infants.
May 21, 2008 •
- It's infertility awareness week in Canada. More Canadians are looking to the U.S. for egg donors.
- One in five Irish couples experience infertility.
- In the U.K.: A good summary of the debate over the HFEA. Do embryos need fathers? Despite a recent defeat, the abortion debate is heating up. Is Britain "one step closer to designer babies?" How about cybrids?
- Gordon Brown defends embryo research: a "moral endeavor" that can save the "lives of millions."
- Simon Jenkins: "MPs should stop meddling in how people choose to plan and protect their families. They have enough trouble with their own."
- South Korea bans cross-species cloning. Disgraced stem cell researcher Hwang Woo-Suk will clone dogs for cash.
May 19, 2008 •
It's time for round two of the "dignity debate." The latest:
- BioEdge says Pinker is "no philosopher."
- Stuart Rennie asks if autonomy is in any "better conceptual shape" than dignity.
- Noah Millman gives "one cheer for Pinker even if he is being a jerk." (See too the interesting comment thread.)
- Alan Jacobs has some fun with Pinker's notion that the sciences and the humanities, "like Harry Potter and Lord Voldemort,...are predestined to eternal enmity: one of them must destroy the other."
May 12, 2008 •
Donna Dickenson is one of Britain’s leading experts on medical ethics. As professor of medical ethics and humanities at Birkbeck College in London, Dickenson has written on a variety of topics, including death and dying, assisted reproductive technology, the patenting of the human genome, and women’s health. In 2006, she became the first woman to win the prestigious Spinoza Lens prize for her contribution to the public debate on ethics.
Professor Dickenson’s latest book is Body Shopping: The Economy Fuelled By Flesh and Blood, a look at the rapidly growing trade in the human body. She kindly agreed to discuss her new work in an interview with Conceptions. Those in New York can see Prof. Dickenson in the flesh during her book tour on June 18-19. (For more details, see her website, www.donnadickenson.net.)
[Interview conducted, edited, and hyperlinked by Cheryl Miller.]
What is “body shopping”?
DD: I use the term "body shopping" to refer to the way in which human tissue, genes, gametes and organs are becoming consumer items like any other.
In your recent op-ed in the London Times, you write that the "'God vs. science' has become a dangerous distraction." How so? What kind of debate should we be having?
DD: In the Sunday Times article, I argued that the vituperative slanging match into which our debate on the Human Fertilisation and Embryology Bill has descended is diverting attention from serious ethical, economic and political issues about the widespread commercialisation of biotechnology. Debate has centred almost exclusively on "human admixed embryos," created from an enucleated cow or rabbit egg and a human somatic (body) cell, with religious figures lining up against this development and scientists insisting it's necessary for somatic cell nuclear transfer stem cell research. But there are many other important issues centring on the activities of biotechnology firms, such as the clinically dubious "product" offered by private umbilical cord blood banks, or the defensive patenting of human genes with an adverse effect on patient care. The 'God versus science' cliché, however, means that even a secular bioethicist like me risks being branded either a 'Luddite' or a 'God-botherer' for daring to pose ethical questions about scientific developments and their commercialisation.
The medical research community has long argued that ceding any ownership rights over tissue to donors will lead to patients buying and selling their own body parts. Should we own our own bodies? And if not, who should?
DD: It's quite odd for the medical research community to make this argument, when they see nothing wrong with commercial firms buying and selling intangible property rights in genetic sequences, or stem cell lines derived from donors of somatic cells and oocytes. The law has been equally contradictory: traditionally the common law viewed tissue taken from the body as res nullius, no one's thing, and therefore refused to allow patients like John Moore to exercise any rights over cell lines made from their tissue. If res nullius is taken to its logical conclusion, however, it should mean that no one, including researchers, universities and biotech firms, has any rights over cell lines of other forms of tissue either. But I don't actually advocate that we should own our bodies unreservedly: instead I favour more communal systems, such as the PXE model in which patient groups and biotech firms share rights over gene patents.
If we do “own” our own bodies, why aren’t we entitled to sell off an egg or kidney if we so choose?
DD: As I say, I don't believe that we do own our bodies straightforwardly, although I do think that in cases where considerable labour has been expended--first and foremost, egg donation, which has been estimated to require up to 60 hours' labour--the donor should have some rights on a Lockean basis of having 'mixed one's labour'. Even if we did own our bodies, ownership rights in our common law are generally seen as a 'bundle of sticks', from which certain forms of control are chosen appropriate to the need in hand. You might have a right to donate your tissue but not to sell it, for example, as these are separate sticks in the bundle.
Many have argued that without payment, there would be a shortage of sperm and egg donors--as there is of kidney donors. If we use altruism as a principle for all tissue donation, how can we avoid a shortage of available gametes, or determine a fair way of rationing available resources?
DD: This seems to me to be a rather narrow outlook. Only the United States, so far as I know, operates a full-fledged system of egg and sperm sale, but other countries manage perfectly well with a more altruistic system. European countries generally pay expenses only, although the amount varies quite widely--but nothing like the exaggerated amounts paid for 'desirable' eggs in the US, up to $100,000 per cycle from blonde, tall, musical and athletic young women. Where there are shortages of eggs and sperm in European systems, they have more typically been caused by changes in regulations about donor anonymity than by any failure of altruism.
In your book, you note the different ways in which egg donation and sperm donation are treated under the law. You observe, "The assault on freedom is only noticed when it begins to apply to men." Are women more vulnerable to biotech predation? How so?
DD: That point doesn't arise from my discussion of egg or sperm donation; rather, in the last chapter, I argue that we all have 'feminised' bodies now insofar as all bodies are increasingly assumed to be open-access. The tremendous publicity given to the patenting of the human genome--one in five genes are now patented, affecting both sexes equally--contrasts with the very minimal publicity given to the demand for women's eggs in 'therapeutic cloning'--in some cases under conditions which may welll have been coercive, as in the Hwang Woo Suk scandal. Female tissue is still more valuable, but both sexes are vulnerable to 'body shopping'.
You have warned that women who donate their eggs for stem cell research could be at risk from life-threatening side effects. Do you think egg-harvesting and stem cell technologies will become more effective and safe in the future, and would that dispel some of your present concerns?
DD: We are seeing good scientific evidence that low-dosage ovarian stimulation regimes produce just as good overall results in IVF as high-dose ones, even though fewer eggs are 'harvested'. But research in somatic cell nuclear transfer research still requires very high numbers of eggs because the technology is very wasteful (Hwang used over 2,200 eggs to create precisely zero stem cell lines). I am more hopeful about the possibility that SCNT [somatic cell nuclear transfer] will be bypassed altogether, if induced pluripotent stem cell lines do indeed fulfil their promise, since that technique doesn't require human or animal eggs. Last week, by contrast, the upper house of the Western Australian parliament voted against a bill to allow SCNT research on scientific grounds, that the technology had failed to deliver on its earlier promise and the ethical issues around taking eggs from women were too overwhelming. This can be seen as a victory for the attempts made by activists and academics such as Marcy Darnovsky, Sarah Sexton, Diane Beeson, Cathy Waldby and myself to ensure that the risks to women became better known.
Critics argue against organ selling and surrogacy on the grounds that the poor are more likely to be sellers, and that the procedures in question are risky. Yet we allow people to take on dangerous jobs. Further, many argue that serving as a surrogate or selling an organ is their best available option. One Indian surrogate explained her decision thus: "This is not exploitation. Crushing glass for 15 hours a day is exploitation." Are organ selling and surrogacy somehow different from other "exploitative" work?
DD: Freedom of choice is not a knock-down argument. Even where we allow people to 'choose' dangerous jobs, we retain health and safety laws to limit the risk. But few such protections exist for commercial surrogates, particularly in the developing world. In addition, we need to look at the massive difference between what the surrogate is paid--even if it seems a lot to a poor Indian woman--and the profits of the commercial agency arranging the transaction. One US agency, for example, pays surrogates $25,000 but charges $100,000. Most of that $75,000 difference is pure profit. Unless you really think the agency has contributed three times as much of the 'value' of the baby as the birth mother, you would have to classify that as exploitation because the rightful contributor of the value has been shortchanged.
How can we work towards finding treatments for serious diseases without commodifying our bodies? What policies can lawmakers adopt to protect people from exploitation without impeding medical progress?
DD: We will be much more likely to find treatments for serious diseases if we can rectify the grossest abuses of body shopping. The biotechnology industry has been allowed to claim that it is the greatest promoter of medical progress, when in many cases it is arguably the greatest hindrance. That's particularly true where defensive gene patents or restrictive licensing agreements block researchers from developing alternative, better or cheaper cures. A single company, Myriad Genetics has patented the BRCA1 and BRCA2 genes involved in some breast cancers, meaning that in the United States (though not in Europe) a clinical diagnostic test for those genes can only be afforded by those who can pay the fee. Lawmakers and judges need to be much more sceptical about the abuses of genetic patenting in particular; this process has begun in Europe but is still largely ineffective in the United States.
One chapter in your new book is subtitled "Resistance is not futile." But the rise of medical tourism would seem to make legislating an impossible task. If all you need is a passport to buy an egg or find a surrogate mother, how can we effectively regulate biotechnology?
DD: The globalisation of the biotechnology industry does indeed made regulation more difficult, but it's not impossible. In Europe there is now a tissue directive binding on all EC countries, which makes egg sale for IVF illegal. Some European countries, particularly Germany, prohibit their citizens from buying surrogacy or eggs abroad, as well as on German soil. Similar laws exist in some countries in relation to sex tourism, especially with minors, so where the political will is there, a way can be found.
May 8, 2008 •
- "The incredible hunch that told me I'd met my sperm donor father."
- A Phony War on Science: Washington Post columnist Michael Gerson discusses Yuval Levin's New Atlantis essay, "Science and the Left."
- "Who decides what's ethical and what isn't?": The ethics of reproductive technoglogy debated.
- Defending dignity: Dr. Edmund Pellegrino, the chairman of the President’s Council on Bioethics, speaks at Stanford.
- Different takes on older mothers: From NPR: For prospective moms, biology and culture clash. From the WSJ: "Women my age just don't get pregnant." Well, they do. From the Detroit Free Press: "I love that I'm an older mom. I wasn't ready before...I am now."
- Hey, where's my artificial womb?
- Sperm shopping from a catalogue.
- In Canada, the rise of twins.
- More on the gayby boom: Surrogate mothers are fulfilling gay men's dreams of parenthood.
- Baby Mama portrays surrogacy as "ridiculous and innocuous."
- Top 10 tips for coping with infertility.
- The business of baby-making.
- A common weedkiller might be linked to unexplained infertility.